DISTURBING WORDS FROM OPTHAMOLOGIST.....PLEASE GIVE ME SOME REASSURANCE

[lauralynn]

Hello my AN Family.  I had a very upsetting day.  I had a follow up appt. w/ my eye surgeon today for my gold weight that was implanted Aug. 5.  He had told me that I have scar tissue from the cornea ulcer.  I asked him where the scar was and he said,"It's right in the middle of your cornea."  That is all he told me about it.  Didn't tell me what that meant or anything.  But the disturbing words that he said were when I asked, "Will my eye always get irritated?  He responded,"What do you mean?"  I said, "Well when I'm in my apartment the air conditioning bothers my eye or when I'm outside and it's windy it bothers my eye so I have to wear an eye patch."  The disturbing words he said were," That facial paralysis you have will be there the rest of your life.  That gold weight that I implanted will be there the rest of your life."  I said,"My doctor left part of the tumor in so I will only have temporary facial paralysis.  I will smile again and I will have this gold weight taken out and the next time I see you I guarantee I will have some of my smile back."  I had my 17 yr old daughter with me.  I went out to my car and started crying.  My daughter asked if I needed a hug...which I did.  I called my boyfriend to calm me down.  My daughter opened the car door and asked what the doctor's name was.  I said, "Why?"  She said, "Coz I'm going to go tell off that doctor!"  Well he was with another patient so she told the tech to relay the message....which I can't repeat.  So proud of my daughter for sticking up for me though.  So AN Family please reassure me that I will smile again....w/in a year I hope.  Please tell me that I haven't been wasting my time doing my facial exercises 5 times a day.  I see my neurologist (who recommended the eye doctor) this coming Monday.  I'm so upset.  If I never can smile again....I don't know what I'll do....cry for the rest of my life!

Laura Lynn

[sgerrard]

What does he know? He probably said that because that's what he has seen in other patients, most of whom were probably not AN patients. He should know better, but he is not an AN doctor or a facial nerve doctor, he is an eye specialist.

Facial nerve recovery can take a while, but there are stories of remarkable improvement on this forum, including some that take 3 to 6 months, and some that are still improving 4 years later. If the nerve was not completely severed, you will get some activity back. If the neurologist is not enough, you can also get in contact with a facial retraining specialist, who will know what they are talking about when it comes to the facial nerve.

So yes, you will smile again. It may not make the cover of a fashion magazine, but it will be unmistakable to people around you, and they will smile right back. Promise.

Steve

[lauralynn]

Thank you so much Steve for your kind words.   Now that I am home and have calmed down...I'm more determined than ever to get my smile back.  So when I do get it back I will pay that doctor a visit and show him!

Thanks again,

Laura Lynn

[4cm in Pacific Northwest]

Laura Lynn,

HUGS.

I am SOOH sorry you had to endure this medical practioner who is acting more like an insensitive nincompoop  than an educated professional. If your neurotologist said that there was a reading on the facial nerve probe, post surgery, - then do not give up hope, yet, that the facial nerve is going to come back. You are still only at 6 months –post op.

However I am going to be honest and upfront with you that the longer it takes for the facial nerve to come back the higher the chance that synkenisis will be involved- but that does not mean “for sure”.

You need to let your neurtologist know that this ophthalmologist is very insensitive to patients with facial paralysis and that he should re-evaluate referring patients to him because of this.

Take a deep breath, sleep on this for a least a week… and sit down and reflectively write to your doctor who referred you to this ophthalmologist. My neurotologist referred me to some great doctors on his team. However not all were great, like the one he referred me to in my home state…  I let him know this. They need to have patient feedback… otherwise they do not know better than to keep referring other vulnerable patients to this guy.

I know you have much on your plate. For next appointments try to see if a friend can take the kids (as this is hard on them too) and ask an adult friend to go with you.

DHM

[nancyann]

What a schmuck ! !   Don't let his ignorance upset you.
I agree wholeheartedly with Steve & DHM.
& remember,  there's a reason for the saying 'patience is a virtue'
Be patient, take deep breaths; keep a peaceful heart through this journey.

Always good thoughts,  Nancy

[leapyrtwins]

Laura Lynn -

the insensitivity of this doctor is incredible.

I'm with DHM, Nancyann, and Steve - don't give up hope.  Your surgery was not that long ago and there have been stories on the forum of others who had similar situations as yours and made great progress. 

Positive attitude.  Chin up.

Jan

[Vivian B.]

Hi Laura Lynn,

The ENT is not as eperience as a Neuro to make a final and permanent determination about your medical status. I think the Neuro will have a whole different opinion. Just believe in your heart and have faith that everything will be o.k. with time. Patience and strength are the key words.

Vivian

[Debbi]

Hi Laura Lynn-

As everyone has noted, ophthalmologists really aren't well versed in facial palsies/paralysis.  That said, he should have kept his opinions within the scope of what he actually knows about, rather than attempting to predict something he knows VERY little about.  I see a very skilled opth. guy - but what he is skilled at is eyes!  When I first went to him for a temp eye weight, he tried to get me to go with a gold weight and he also wanted to do the corner stitch to pull my lower lid up.  This was when I was about 3 months post - I declined everything but the temp weight and in another several months my lower lid was back to normal and I no longer needed the weight most days.  Give yourself time and try not to get discouraged.  Talk to your neurotologist about recovery and about possible referral to a facial therapist.  And, unless you really like this opth., consider finding a new one ...

hugs to you,

Debbi

[Pembo]

I have 2 opthamologists in the family and they both reassured me that my eye function would improve and it DID! I also had a 4 cm tumor and woke up to complete one sided facial paralysis. At first I used drops hourly, taped my eye shut, never had tears, couldn't blink...it was awful. However my eye doc relatives said don't get the gold weight.

Fast forward 5 years - I'm back to wearing contacts, I only use Restasis twice a day, my blink is almost normal, I can muster tears now and then and I never did get the weight.

I also went to a facial therapist in Pittsburgh. He has done a lot of research on facial paralysis/numbness. He has seen improvement in patients up to 15 years!!!! For me it's been 5 years and I still see and feel recovery. I may never be the same again, but I actually have some vacation pics this year where I almost look like the old me.

Stay strong and like others have said, no doctor has all the answers.

[Lilan]

Is this the same eye doctor who yelled at you before?

Dump him.

[lauralynn]

Thank you all for your kind words and advice.  Yes it is the same doctor that yelled at me.  My neurotologist told me he was the best, that is the only reason I went to him and  continued to see him.  I will be changing opthamologists and will see the idiot one once I have some of my smile back....just to prove him wrong!  I know I will smile again...I am more determined than ever now.  Thanks again everyone.

Love,

Laura Lynn

[4cm in Pacific Northwest]

Stay strong and keep moving forward.

DHM

[epodjn]

I agree, dump that horrible doc. My neurologist was almost as bad. I did my research, talked to doctors I trusted, and found someone who is positive and supportive. I refused to take "this is how it will be for the rest of your life" for an answer. And guess what? At 7 months out i finally got some movement. It's slow but I'm now almost 9 months out and I have a smile that children in the grocery store recognize and respond to. It's a very small smile, but it's a smile!!! Hang in there. It will most likely get better when you least expect it.

[Jim Scott]

Laura Lynn ~

Just popping in to agree with the rest of the folks that (a) the ophthalmologist is not only making broad and unsupported assumptions but, (b) is a jerk for telling you these terribly negative things with no basis in fact.  Granted, it may take longer than you would like to regain your normal facial functions and things may not be 'picture perfect' -  but you will improve.  This condition is temporary and can be addressed with a multitude of approaches, from physical therapy to surgery, if need be.  Your fighting spirit will serve you well in this struggle.   I agree with DHM that a thoughtful, civil letter to your neurologist advising him that the ophthalmologist he referred you to is completely tactless and does as much harm to his patient's emotional well-being as he may do good for their vision problems, at least in your case.  He may or may not choose to respond or drop the ophthalmologist from his referral (they may be golf buddies or something ) at least you'll have made him aware of the other doctors shortcomings and perhaps helped another AN patient who may step into the path of this hope-killing ophthalmologist.  Please don't allow one uninformed, thoughtless doctor to derail your progress toward normalcy or discourage you to the point of despair.  From your follow-up post, I can see you're using this doctor's caviler attitude toward your recovery as an impetus to 'show him' and thus, emerge victorious from your struggle to get your smile back.  Good for you!

Jim      

[Sue]

Hang in there Laura Lynn, and PROVE HIM WRONG!  The best revenge.

Sue in Vancouver, USA